Friday, July 29, 2011

The AIDS Drug Assistance Program (ADAP) provides HIV/AIDS related prescription drugs to uninsured and underinsured individuals living with HIV/AIDS and in a handful of states provides Hepatitis C treatment which consists of interferon-based treatment and Ribavirin.

ADAP funds are used to provide medications to treat HIV disease, or to prevent the serious deterioration of health, including measures for the prevention and treatment of opportunistic infections. As a payer of last resort, ADAP only serves individuals who have neither public nor private insurance or cannot get all of their medication needs met through their insurance payer. In order to qualify you must prove an HIV/AIDS diagnosis and be below your states income cap to receive this insurance.

AIDS Drug Assistance Programs (ADAPs) are authorized under Title II of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act of 1990 (reauthorized in 2009). ADAPs are not entitlement programs but are dependent on federal and state discretionary funding, which determines how many clients ADAPs can serve and what levels of service states can provide.

When learning of my co-infection of HIV/HCV I did a lot of research online. How was I going to pay for this treatment, and if I could not afford the medicine, how was I going to get the medicine I needed to stay alive and to stave off a chronic Hepatitis C infection.

During my Hepatitis C treatment I was fortunate to have private insurance which paid for my treatment, but what if I did not have private insurance, or private insurance that did not cover Hepatitis C treatment. Hepatitis C is emerging as a pandemic in cities across the country for those infected with HIV/AIDS, and though most commonly found in people who share needles.. An estimated one-third of people with HIV are also infected with hepatitis C virus (HCV), which is now regarded as a sexually transmitted infection among HIV positive gay and bisexual men. (CROI 2011)

Coinfected individuals tend to experience more rapid liver disease progression than those with HCV alone, and they do not respond as well to interferon-based treatment for chronic hepatitis C. But starting hepatitis C therapy early, during acute infection, can lead to better outcomes. Acute HCV infection is often asymptomatic, but HIV positive men have a better chance of detecting HCV early because they undergo regular liver function monitoring that can reveal HCV-related abnormalities.These liver function tests can be shown on your lab work as AST and ALT. A spike in these numbers, or an abnormal reading should prompt your doctor to look into a possible Hepatitis C diagnosis. About 65% of confected patients with HCV genotypes 1 or 4, and 81% with genotypes 2 or 3, achieved sustained response to interferon-based therapy started during acute infection, researchers reported at CROI 2011.If you have HIV AND Hepatitis C and wondering if your states ADAP covers Hep C treatment I have done the research for you. Below you will find a list of states that do and do not provide Hepatitis C treatment.

All states ADAP funding including the US Virgin Islands and Puerto Rico cover HIV medications. ****

The follow states do cover Hepatitis C treatment

Alabama

Alaska

Arizona

California

Connecticut

Delaware

District of Columbia

Hawaii

Iowa

Maryland

Michigan

Mississippi

New Jersey

New York

Oregon

Pennsylvania

Puerto Rico

Utah

Virginia

Washington

The following states do not cover Hepatitis C medication

Arkansas

Colorado

Florida

Georgia

Idaho

Indiana

Kansas

Kentucky

Louisiana

Minnesota

Missouri

Montana

Nebraska

Nevada

New Hampshire

New Mexico

North Carolina

North Dakota

Oklahoma

Ohio

South Carolina

South Dakota

Tennessee

Texas

Vermont

Virgin Islands (US)

West Virginia

The following states cover only interferon but not Ribavirin

Illinois

Maine

The following states cover Ribavirin and NOT interferon

Rhode Island

****disclaimer**** (updated as of 7/27)

With the current crisis in funding of ADAP programs Nationally; I would advise that you google your states ADAP program and contact information for that program. States are placing people on waitlists to obtain these medications, and are also reducing formularies.

Friday, July 22, 2011

Earlier this month a groundbreaking partnership was forged between the ADAP Advocacy Association (aaa+) and MyGov365 designed to better engage people living with HIV/AIDS in the legislative process at the federal, state and local levels. Constituents (a.k.a., voters) often make things happen because lawmakers benefit from their support; so imagine what constituents can do if they were better informed about legislation, as well as connected to their peers who share likeminded goals...in this case, securing appropriate and timing access to care and treatment for people living with HIV/AIDS. MyGov365 provides the necessary tools to make it happen!

aaa+ is the first national HIV/AIDS organization to harness the networking and educational power of the MyGov365 platform. The nonpartisan platform empowers people living with HIV/AIDS with a free suite of tools to enhance communication and collaboration with the general public, peers and elected officials.

MyGov365 is comprised of a diverse mix of everyday citizens with one common passion: to use innovative technology to bridge the communications gaps between citizens, government, organizations and political professionals. MyGov365’s platform intelligently matches users to their districts and elected officials, making it extremely easy for officials to share information and gather feedback. As updates occur such as introduced legislation, bill summaries, or discussions, constituents receive notifications about activity in their district and/or by their specific elected officials. This increases awareness and engagement, and can help lay the groundwork to build community support for various issues, which in turn makes it easier to get legislation considered. Individuals can create their own profile for free at http://www.mygov365.com!

In the Spring 2011, Americans witnessed the "Arab Spring" sweep across the Middle East, ushering in a new era of democracy and freedom for millions of people. Their success was fueled by years of discontent, coupled with a newfound ability to communicate, organize and protest called social media. Never before had people been armed with the tools to instantly communicate with each other on such a large scale to influence political change.

In the United States that same model needs to be employed by HIV/AIDS activists -- and in no other case is the need more pressing than by ADAP constituencies and stakeholders. Weekly, we witness approximately 200 of our fellow HIVers get relegated to a demeaning, stressful and unhealthy place called an ADAP waiting list. In fact, as of July 14th, there were 8,689 individuals in 13 states on ADAP waiting lists, including Alabama with 88 individuals; Arkansas with 37 individuals; Florida with 3,558 individuals; Georgia with 1,669 individuals; Idaho with 23 individuals; Louisiana with 886 individuals; Montana with 29 individuals; North Carolina with 302 individuals; Ohio with 373 individuals; South Carolina with 858 individuals; Utah with 29 individuals; Virginia with 837 individuals; and Wyoming with 0 individuals.

The aaa+/MyGov365 partnership has the ability to re-engage longtime leaders, while also attracting fresh new voices to this fight. What better way to teach the next generation of HIV/AIDS activists than by political networking the very same way social networking is done on Facebook, or professional networking is done on LinkedIn? Often times, too, some constituents complain that understanding the political and legislative process is difficult because the process isn't spelled out in layman's terms, or the information isn't easily and readily accessible. MyGov365 changes that paradigm.

According to Jay Resio, President of MyGov365, using the civic engagement platform, aaa+ will empower its new and existing members to stay informed and engaged about important issues, legislation and civic activities related to the organization's mission. Members can track legislation and receive updates, cast votes on legislative initiatives, collaborate in the ADAP Advocacy Association’s network, and more. ADAP constituencies and stakeholders will benefit from MyGov365's ability to provide member feedback and insight to elected officials, civic leaders and other organizations to help expedite the legislative and civic decision-making process.

Thursday, July 14, 2011

Some of you may be familiar with and may of read my previous posts -here- here and here about the ever growing AIDS Drug Assistance Program (ADAP) waiting list in the United States. Well it is that time of year again when the ADAP Advocacy Association (aaa+) holds it annual ADAP Conference. aaa+ strives to promote and enhance the AIDS Drug Assistance Programs (ADAPs) and improve access to care for persons living with HIV/AIDS. aaa+ works with advocates, community, health care, government, patients, pharmaceutical companies and other stakeholders to assure that access to services recognize and afford persons living with HIV/AIDS to enjoy a healthy life. As always I have to applaud and say THANK YOU to Brandon Macsata for organizing this whole thing and Amanda,Christopher,Joey and Regine and all the volunteers for making the conference a success.

Currently there are 8,615 Americans (as of 6/30/11)who are not getting their life saving medication. They are just simply sitting on a waiting list. Since 6/29/10 over 6,000 Americans have been added to the ADAP waiting list. That is in just one year.This is what made this year's conference extremely important. Can you imagine finding out you are HIV+ today and not being able to get medications because you can't afford them. AIDS medications can cost $1200 a month or more. Would you take the time to apply for ADAP if it meant you were going on a waiting list ? For many Americans this is a reality. So on top of the 8,615 currently on the list can you imagine the hundreds or thousands of people living with HIV/AIDS who don't apply since they can't get care and treatment they need.

It is very frustrating to me. I feel that every human being should be given the treatment they need to live a happy life, regardless of what disease they have or how big their bank accounts are. How can someone not be able to look inside themselves and find the compassion to want to help another human being. It leaves me dumbfounded. We can sit here and point fingers but as a nation we need to stand up to all responsible and create a movement.We literally need to take the streets and fight for our lives.

Lets get back to the conference. The conference opened up with guest speaker Bishop Joyce Turner Keller. The Bishop has lofted the term “southern hospitality” to an entirely new level. She is not only the founder and CEO of Aspirations, a non-profit faith-based community service organization, but someone who is living with HIV/AIDS herself, and has dedicated herself to educating, supporting and inspiring others living with HIV/AIDS throughout the nation.

She was AMAZING. She not only walked in like a rock star with bright red hair, she brought the house down with her opening speech. We all felt her passion and it re-energized the passion inside all of us. She kept asking us one question thought out her speech. "Where you at ?" It clicked in so many ways. At one point during here speech she was calling out names of states. "Florida..Where you at ? Georgia..Where you at ?" Then attendees from each state would make noise and raise their hands. It was very empowering. By the end of the conference she had us all screaming "Where you at ?" It made it me realize how important it is for us living with HIV/AIDS to STAND UP and get our family and friends involved. I hope to have her come on POZIAM Radio sometime soon.

POZIAMers MeetTuesday evening I had an awesome experience. I have always wanted to get a group of POZIAMers together for a dinner or event. FYI - POZIAMers are members of my social network. I knew a bunch of them would be in DC for the conference and I would be meeting them for the first time. So I organized a dinner at Level One and about 20 people responded yes. Most of all met out front of the Westin Hotel.

With the help of our tour guide Christopher Myron, our clan arrived at Level One in one piece. There we met up with other POZIAMers who lived in DC but were not attending the ADAP Conference. It was such an amazing feeling to meet the people you see online in person. People who you talk to everyday or read their blogs. We had a great time and obviously took plenty of pictures. I can't wait for the next POZIAMers dinner. Some of us were outside the hotel sharing stories until 3am. We didn't care what time it was. These little conversations with fellow advocates can be life changing. Having Dab Garner as my roommate was one of the other highlights of my trip. Spending time and having conversations with a man you who has been fighting this for over 30 years was priceless. I admire and respect his wisdom and strength. This was the icing on the cake for me.

1st Annual ADAP Leadership Awards DinnerWednesday evening we all attended the 2011 Annual ADAP Leadership Award Dinner. As a Board member of aaa+ I have to say we recognized an amazing slate of leaders, who for the last year have taken it upon themselves to raise awareness about the AIDS Drug Assistance Programs. All doing their part in the fight in their own way. It was an honor to be among them all. Over all the conference was a great experience and brought people from across the United States together to discuss a every important issue.